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A Legal Research Agenda for the Human Genome Initiative

The Human Genome Initiative (HGI) is the large-scale, multinational effort to map and sequence the human genome. Completion of the Initiative is estimated to require about fifteen years, and its projected $3 billion price tag is enough to place it in the big science category. This is the first such undertaking for the biological sciences, and the decision to go forward has generated much public discussion. Even before the Initiative officially began, the HGI leaders in the United States at the Nation Institutes of Health and the Department of Energy recognized the importance of addressing the legal, social, and ethical issues that the Initiative would raise and announced that part of the funding would be used for studies of those issues. Some of these issues are, in fact, new, arising from the scale and specific goals of HGI. Others have been raised, explicitly or implicitly, by earlier developments in and applications of genetic research. HGI, however, has focused public attention more broadly on previously raised issues or has made them appear more likely to arise in the near future or on a greater scale than had previously been envisaged.

This report presents the results of a Project, funded by a grant from NIH, carried out by the Arizona State University Center for the Study of Law, Science and Technology to identify the legal issues arising out of HGI and the empirical and analytical work necessary to resolve them - a Legal Research Agenda. The author was the Principal Investigator under the terms of the grant. This report is a composite summary of the exchanges that took place at the workshops and is, in that sense, the product of all the participants. A list of participants accompanies this report.